Worth going to A&E?

[Kitkat2020]

hi all

I am diagnosed endo and adenomyosis I had the op 3 years ago to remove endo and had a cyst removed from my ovary.

Just looking for some advice about whether it’s worth attending A&E and whether they do any tests there? I’ve been having a really bad flare last few months, sometimes it hurts to walk. I’ve recently had abnormal smear too and getting a colposcopy next week. I had a private transvaginal ultrasound which confirmed adenomyosis again and my GP have just said there’s not much change from my last scan so keep waiting, despite there being a big change in symptoms.

My lower back is constantly aching and most days I have pain at the minute, I’ve had 2 instances of bleeding after sex but drs just keep saying to wait for gynea app which I’ve been waiting for over a year now. I feel like something is wrong but feel bad going to A&E as I’m not sure it’s ‘bad enough’ any advice appreciated, feel like I’m constantly talking to a brick wall with GPs, but don’t want to go to hospital if they’re just going to throw pain killers at me and not actually investigate.

[Tangoandmax]

Hey, I was sort of in this position too re. Daily pain, bleeding post sex, abnormal smear.

Historically when going to A&E with abdominal pain, I’ve left in the same pain, no diagnosis, just additional pain relief (sometimes) I stopped going eventually and just suffered through. They check appendix, do a urine sample rule out infection and say I can see you’ve been referred to gyne, wait for that appointment.

The colposcopy should help understand the bleeding. They’ll biopsy to check cells. Mine turned out to be a fairly significant cervical ectropian. (Not harmful) This can be treated in colposcopy clinic but I had to wait to have treated under general anaesthetic due to severity of pain during a speculum.

Have you been taking any hormones between now and your last op to try and hinder regrowth? Peoples endo grows back at varying rates so it might be that adhesions have grown back which would explain worsening pain. For reference, I had lower back pain daily, my ovary was attached to my pelvic walls which was where the majority of my endo was located/removed.

I’d make a PALS complaint about the impact on your day to day life to the hospital you have been referred to. X

[Kitkat2020 in reply to Tangoandmax]

Thanks so much, I’ll hang on for gynea and mention I’m waiting at colposcopy. I haven’t taken anything because we’ve been seeing if I get pregnant, which I’m coming to terms with it not being likely as I only have one good ovary after my op and I don’t want to go through IVF personally, so it may be that it’s grown back, thanks for you reply it’s really helpful, will update after my colposcopy xxx

[Tangoandmax in reply to Kitkat2020]

I’m so sorry to hear you have struggled. I really wish they took this disease more seriously re. wait times/treatment. The impact to fertility is obviously time sensitive and it’s so upsetting for people. We also do not have children yet. Haven’t even been able to try due to the amount of pain. Wishing you the best! Do let me know how you get on at colposcopy. Xx

[Shabs2024]

I had a ultrasound scan beginning of July that my gp requested and it came back showing fibroids adenemyosis. Which i was aware of. So my gp said not much change, did a routine request to gynae. But the pain was awful, 2 visits to hospital. They were not interested at all, i then had a private MRI. Which showed stage 4 endometriosis damaging my bowel, kissing ovaries all stuck to uterus. You know your body, if something doesn’t feel right push to get it checked. Unfortunately in my experience i felt nobody wanted to listen and fobbed me off.

[635703]

hello, I’m so sorry to hear of your symptoms and the impact that’s having on your life, it’s scary and so unfair. 🫂💛

I think if you contact PALS ensure you mention trying to get pregnant because protecting your fertility must be a priority. Ask your PALS to expedite your Gyne appointment.

There maybe things Gyne can do to manage your pain to ensure you stay away from A&E because it’s can be a traumatic experience. You wait for ages and it’s not guaranteed you’ll get pain relief. I’d ask GP if desperate. A pain management strategy is taking regular pain meds to stay ahead of the pain. It’s not ideal but if you have an expedited Gyne appointment, it might be a short-term solution.

So many of us Endo-Warriors need mental health support to cope with everyday life. You can ask your GP about that and it might be short term but it’s better than nothing. There’s also the Endometriosis.Uk helpline. Check the website for opening times and it’s for emotional support and not medical advice, but it’s manned by Endo Warriors, and personally I have found it amazingly helpful 💛💛💛

I hope you can get some relief and a treatment plan quickly, despite the ridiculous and rage inducing long waiting lists.

Remember to do nice things for yourself to bring comfort in flares. I have good nightmare, hand creams, listen to podcasts, read books, watch shows to distract my brain from the pain. I use a heating pad for 20 minutes only, so my skin does t get mottled and damaged.

Hope it helps lovely ☺️